Dementia Caregivers Especially Stressed, Report Finds

Amy Goyer shares results of AARP & United Hospital Fund report on stressed & depressed caregivers caring for those w/cognitive & behavioral health conditions.

Medication time can be exhausting and discouraging for Dad and me.

Family caregivers who are caring for loved ones with cognitive and behavioral health conditions, such as Alzheimer’s disease and depression, face particularly demanding challenges, according to a new report from AARP and the United Hospital Fund.

As a result of all the demands on them, a majority of these caregivers say they feel stressed much of the time as they try to juggle their caregiving responsibilities with other work or family obligations.

As primary caregiver for my dad, who has Alzheimer’s disease, I can personally attest to these findings. In addition to the heartbreak and emotional exhaustion of seeing my dad’s personality and abilities change, there are key practical differences from taking care of my mother.  Though my mom suffered a stroke, she was generally cooperative and cognizant of helping us help her. With my dad, that is not always the case.

Take, for example, medication management, which can be particularly challenging. (The new study found that 84 percent of caregivers say they assist with this task, and more than 4 in 10 say it’s hard because it’s time-consuming.)

That certainly has been my experience. Medicine time with my dad has become one of the greatest difficulties, often taking an hour or more as we cajole, distract and sweet-talk him into swallowing pills or liquid medications. He doesn’t understand why he should do so. If we’re not alone, I often tag-team with my sister, Linda, and a paid caregiver to get it done. Mom simply took her pills within minutes when we gave them to her.

I’m certainly not alone in dealing with these challenges: Behavioral health conditions are significant for those over age 50, with 20 percent facing depression and 11 percent struggling with anxiety. The number of those with Alzheimer’s disease in the U.S., currently 5 million, is projected to nearly triple by 2050. There will be fewer potential caregivers for each care recipient as boomers age, and these caregivers tend to be in the role longer than other family caregivers. We are stressed and depressed - and that will not change unless we receive better training, support, respite, care coordination and understanding of the incredible burdens we bear of the heart, mind and body.

Photo Credit: Kelly McGinnis

 

4 comments
TheCaregiver61
TheCaregiver61 5pts

It is stressful, but also rewarding. I have taken care of Mom for just about 10 years now. She has COPD, CHF, and severe dementia. On the days when she is lucid, she is cheerful and happy. It is wonderful to see her as she used to be. The bad days are bad. Dementia is a Monster. It robs a person of who they are and leaves a shell behind. I have found that regardless of how bad the day is, a smile and kind words helps both her and I.

DresdenPlaid
DresdenPlaid 5pts

One of the struggles we faced was my grandmother forgetting WHY she needed medication. If she was having a lucid moment she was incredibly active in her health care - including the taking of pills, but most days and nights we had to explain dementia and Alzheimer's to her and what each pill was. Some nights I could tell she was in a silly mood so I would joke, "this pill will get rid of your freckles, and this pill makes your brown eyes turn blue..." ANYTHING to keep the mood light. At the end of the day my grandmother needed to feel like she was in control. It's always such a balancing act.

bm92158458
bm92158458 5pts

I have been a caregiver for my cousin for over 6 years now.I live in the state of Louisiana and can not get paid for being a caregiver.I was making over 48k a year.Her children do not want to help in any form way or fashion,if it wasn't for me she would be put in a old folks home and be forgotten.I can count all the thank yous they have given me on one hand.She has 1 son-in-law that is a banker,1 that is a lifer in service,2 daughters that think of only themselfs,and the doctors are trying to figure out why I am depressed.    this post ought to explain it all.

agoyer
agoyer 5pts

The family issues caregivers face compound the stress and pressure around the actual caregiving - especially for those of us who care for loved ones with dementia. I hope you are treating your depression and taking it seriously - you cousin clearly needs you and you need yourself too! Sending you a hug...